Struggling.

[Gemma_210512]

Hi,

New to this and feel this is going to be a long post so please bear with me. I also just want to acknowledge I am aware as a sibling it’s quite different to being a main carer.

I am 38 and my brother has learning difficulties as well as epilepsy. He was born when I was 10 and I found myself feeling quite protective and close to him, almost like a backup Mum. I have other siblings but they rarely see my brother, just at Christmas and birthdays really.
My parents are great at doing all the practical things such as trying to ensure he can be independent as possible, ferrying him to and from appointments and picking up where the carers fall short sometimes all this whilst still working themselves which I think is a struggle and never ending!

However, I feel they aren’t so good at being loving (they struggled to show love to us too so it’s nothing personal to him) they moan A LOT at him because he’s like a typical teenager. It’s all very negative. I don’t think they think about how to make him happy as such. It’s more about keeping the day to day things going. It’s sad to see because I can see has now picking up some of their negative ways.

As a result of this I feel this obligation to try to make things better for him. I desperately want him to be happy and have a fulfilled life. However, it’s got to the point where I am getting really stressed and I hate to admit this, but resentful at times.

He lives in a supported living flat with a house mate with carers that come in to cook food and provide general support. His lifeline is his phone, he is constantly on WhatsApp, messaging me as well as others, but also he wants to facetime every night and I hate to say no, mainly because I feel sorry for him I think. That sounds awful but due to his learning difficulties the conversations are very repetitive and one sided so sometimes they feel like a chore.

I also struggle when I try to do a lot for him, take him away on holidays, mini breaks, to his favourite football ground, cinemas, restaurants etc. I also recently arranged for a new TV and games console to go in his bedroom as he was feeling he needed a space to go to when he wasn’t keen on the carer he had on some days. I want to do all these things, but I find myself becoming resentful because I don’t think they are appreciated. I don’t get any thanks from him (I put that down to partly his disability and part the negative role models he’s had) but also none from my parents. Even as I write this is can imagine people may say well look at all they do and they get no thanks!! Which is true.

Recently I’ve been quite ill myself and he will ask how I am but this is purely because he wants to know when I am well enough to do things with him again.

I know when my parents pass away I will be the one responsible for him, I imagine he will live with me one day which means I put a pressure on myself to work hard to ensure I have enough money to make sure this can happen.

I also have a paranoia around him having a fatal accident due to his Epilepsy which means I feel I can’t not check my phone each time he makes contact.

Finally, when I’m take him out, whether that’s for a walk or for food etc, I’m in a constant stressed state which her probably picks up on. I find it really hard to relax. I don’t know if this is to do with his disability but I have never seen him be really happy, he’s excited at the thought of things like a holiday but when it is happening, regardless of who he is with, he doesn’t seem to be that happy in the moment. It’s hard to explain but for example when I took him to go to Liverpools football ground, I looked at his face and there was zero excitement. Despite him being a huge fan. Which again makes it hard to do these things because I can’t seem to make him happy.

I just want him to be happy and for me to also be happy!

Any advice would be greatly appreciated.

Thanks for reading.

[sunnydisposition]

Hi Gemma & welcome

Your had done a great deal over the years for your brother (in high sight maybe too much for too long). Your are not responsible for your brother having a learning disability or epilepsy. Like wise your parents who I would suggest have their own feelings. Of having a child with additional needs. I am not surprised you are feeling the way you do which it totally natural.

The fact your brother is in supported accommodation is to have his needs met. If you withdraw some of your visits and time the care staff. I am sure would step in but as you know. Your brother is an adult regardless of his age. And in life there are times when things don’t go to plan. And learning disability or don’t we have to learn how to cope with sudden changes. That no to say we don’t like it. Your brother will not always have you and his parents. And he will cope and manage his life.

If your brother is in supported accommodation. Why do you think your brother may live with you in the future. This would be very unwise as if something happened to you. He would return to supported accommodation.

Sadly, some individuals with learning disabilities are not able to understand. Other peoples opinion’s and/or feelings. How to respond in perhaps a manner we would like. There is no praise and thanks you are just seen as your brothers sister. You have always been there for him. You are a constant reliable person. Who he feels safe with but you are not. Available to see to his every physical and emotional need. That’s why he is in supported accommodation.

When things like the carer issue. That needs to be addressed with the care manager. And a alternative sort to manage that problem.

Just because you brother doesn’t always show a response. To the things you do for him doesn’t mean he hasn’t enjoyed that activity etc.

The phone you need to be very proactive. Which I know will be very hard! But be firm in how often you will answer it. Most supported living have staff are on site/hand. And would call you or your parents should there be a epileptic episode.

[Gemma_210512]

Hey Sunny disposition,

Thanks for reading and your response! The problem is the carers do the bare minimum, they don’t care enough to try to make his life more fulfilling, to try new things with him. It appears they will take the easiest option ie sit and watch TV with him.

Also the paranoia around the epilepsy is that for periods throughout the day and night there are no carers. All it would take is for him to have a seizure whilst in the bathroom, washing his hands for example and for him to fall and crack his head on the sink or making himself a tea, boiling water, smashed mug… It could be a disaster.

I just spoke with him tonight and I think maybe I need to somehow try to get him to appriciate me a little, if I say no to Facetiming him, sometimes he will get moody and I want to try and say what if I was like ok the other siblings and never called so be grateful!! But that’s a hard one to explain.

Sometimes I think right I will bugger off to Australia, then you all might appreciate me a little! Anyway, I shouldn’t complain, I’m well aware compared to many, including my parents, I have a very easy path. I just find it hard to deal with sometimes.

Thanks again for taking the time to read and reply

[Melly1]

Hi Gemma,

Your brother should have a care plan. This should include activities he likes to do - like a timetable for the week e.g. when he will go to a restaurant or the football ground etc. The care workers should then be helping him to these things. A lot of people with a learning disability find it hard to self advocate, your brother sounds like he may be one of them. He might need support to say what he would like to do. If he shares the support with his housemate, then there will need to be some compromise. If he did more activities, he wouldn’t need to FaceTime you so much and would have more to talk about when he did. Pre-Covid did he go to any clubs? Gateway or Special Olympics or any other Mencap clubs etc?

Your brother would probably appreciate you more, if you weren’t always instantly available. As the saying absence makes the heart grow stronger. I know S always appreciates me more when we have been apart.

I agree it would be a mistake to move him back in with you in the future, for both of you.

Re him not seeming happy when you do his favourite activities with him - several things to consider: he may have shown more joy as a child, but now he his older, his feelings are less obvious. Also, he may be picking up on your anxiety.

If he has generalised tonic clonic seizures, he could wear an alarm which would summon help if needed - this might help you to feel less anxious and ensure help is available quickly.

I know when my parents pass away I will be the one responsible for him, I imagine he will live with me one day which means I put a pressure on myself to work hard to ensure I have enough money to make sure this can happen.

I also have a paranoia around him having a fatal accident due to his Epilepsy which means I feel I can’t not check my phone each time he makes contact.

Finally, you are clearly a very caring sibling and clearly care a lot for your brother. You might find like minded siblings here https://www.sibs.org.uk

Melly1

[Ingrid_Carers_UK]

Hi Gemma

It sounds like you are doing an amazing job looking after your brother! And it sounds like you might benefit from coming along to one of our online meetups, we’re running weekly online (zoom) sessions for carers to come along and chat to each other, many of our carers have found them supportive and informative and a chance to grab a coffee and chat with other carers who are in similar situations.

I’ve attached a link to our meetup page, there are various sessions on there; care for a cuppa, share and learn, please have a look. It would be lovely to see you there and there’s no pressure to share anything more than you’re comfortable with. Here’s the link Gemma

https://www.carersuk.org/help-and-advice/get-support/online-meetups

with best wishes
Ingrid